Living with a brain or spinal cord tumour

Rehabilitation is treatment designed to help people recover from or adjust to injury or disease. After treatment for a brain or spinal cord tumour, most people will have a rehabilitation assessment to identify what they need help with and ways to manage changes. A range of health professionals offer various therapies (see below) to help restore your previous abilities or help you adjust to changes or long-term effects.

Types of rehabilitation

A range of therapies can support you in your recovery. These may be available at your cancer treatment centre, community therapy service or through a rehabilitation specialist at a rehabilitation hospital.

You may also be referred to allied health professionals (e.g. physiotherapist, occupational therapist). Ask to see a therapist experienced in working with people after treatment for brain or spinal cord tumours.

Physiotherapy

Your physical abilities may be affected. Physiotherapy can help you learn how to move more easily, develop muscle strength and improve balance.

Moving and strengthening your muscles can reduce tiredness or weakness related to treatment. If you can’t move easily, you may be able to learn techniques, such as using a walking stick, to help you stay as independent as possible.

A neurophysiotherapist specialises in treating physical changes caused by damage to the central nervous system.

Cognitive rehabilitation

Your memory, language skills, concentration, planning and problem-solving skills (executive function) may be affected.

A neuropsychologist, speech pathologist or occupational therapist can help improve these cognitive skills. They may use memory strategies, speech therapy, technology such as calendars and reminder alerts, and word puzzles.

Exercise

A physiotherapist or an exercise physiologist can give you advice on how to increase physical activity and exercise safely to improve circulation and mobility, reduce swelling, and increase both your heart and lung fitness. They will also help you find ways to return to activities you previously enjoyed.

To find a physiotherapist in your area, visit Australian Physiotherapy Association, and to find an accredited exercise physiologist, visit Exercise & Sports Science Australia.

Speech therapy

Your ability to talk may be affected, which is often called aphasia. A speech pathologist could help to restore speech.

Speech pathologists also work with people who have difficulty swallowing food and drink (called dysphagia).

To find a certified practising speech pathologist, visit Speech Pathology Australia.

Sight

You may lose some or all of your sight as a result of a brain tumour, depending on what part of the brain is affected.

Vision Australia can teach you tips and strategies to live independently. Call 1300 84 74 66.

Occupational therapy

If you are finding it harder to do everyday personal activities (e.g. showering, dressing, preparing a meal) or more complex activities (e.g. work and driving), an occupational therapist may be able to help. They can offer a range of strategies and aids to help you manage fatigue, physical and cognitive changes so you can improve or maintain your independence.

To find an occupational therapist near you, visit Occupational Therapy Australia.

A brain tumour or its treatment can sometimes cause seizures (fits or convulsions). A seizure is a disruption to the normal patterns of electrical impulses in the brain.

There are 2 main groups of seizures:

Generalised seizures – These occur when all of the brain is affected, and typically involve the whole body. The most common type is called a tonic-clonic seizure (previously known as a grand mal seizure).

A seizure often starts with a loss of consciousness. The person’s muscles may stiffen, their limbs may jerk rhythmically, and their breathing may be shallow for up to 2 minutes. They may bite their tongue, and lose bladder and bowel control.

Focal seizures – Also called partial seizures, these occur when only one area (lobe) of the brain is affected. Focal seizures affect one part of the body, such as an arm or leg.

Symptoms of focal seizures depend on the area of the brain involved.

They may include:

• twitching
• jerking
• tingling or numbness
• not being able to speak
• changes in vision or hearing, strange tastes or smells, or a feeling of deja vu. 

Focal seizures may also cause a brief loss of consciousness, changes in mood, and memory loss just before, during and after the seizure.

Ways to prevent seizures

Seizures can often be prevented with anticonvulsant medicines (also called anti-epileptic or anti-seizure medicines). Feeling overstimulated or very tired can also increase your risk of having a seizure. Try to get 6–8 hours sleep each night. Drinking less alcohol may also help.

How to help someone having a seizure

• Remain calm and stay with the person while they are having a seizure. Refer to their Seizure Management Plan (see last tip in this list), if they have one.
• Do not hold them down or put anything in their mouth.
• Protect the person from injury (e.g. move hazards, lower them to the floor if possible, loosen their clothing, cushion their head and shoulders).
• Call Triple Zero (000) for an ambulance if it is the first seizure the person has had; if the person is injured; if there was food or fluid in the person’s mouth; if the seizure lasts longer than 5 minutes; or if you are unsure of what to do.
• Time how long the seizure lasts so you can tell the paramedics.
• After the jerking stops, roll the person onto their side to keep their airway clear. This is particularly important if the person has vomited, is unconscious or has food or fluid in their mouth.
• Watch the person until they have recovered, or the ambulance arrives.
• If the seizure occurs while the person is in a wheelchair or car, support their head and leave them safely strapped in their seat until the seizure is over. Afterwards, remove the person from their seat, if possible. Roll them onto their side if there is food, fluid or vomit in their mouth.
• Explain to the person what has occurred. In many cases, people are confused after a seizure.
• Allow the person to rest afterwards as most seizures are exhausting.
• For detailed information and an online tool for creating a Seizure Management Plan, contact Epilepsy Action Australia on 1300 37 45 37.

Anticonvulsant medicines

Different types of anticonvulsant drugs are used to prevent seizures. You may need to have blood tests while you are taking anticonvulsants. This is to check whether the dose is working and how your liver is coping with the medicine.

Side effects of anticonvulsant drugs vary, but they may include tiredness, gum problems, shakes (tremors), nausea, vomiting, weight changes, depression, irritability and aggression.

If you are allergic to the medicine, you may get a rash. Tell your treatment team if you have any skin changes or other side effects. Your doctor can adjust the dose or try another anticonvulsant. Do not stop taking the medicine or change the dose without your doctor’s advice.

Tumours, seizures, brain surgery and medicines (such as anticonvulsants and some pain medicines) can affect the skills needed to drive safely.

These skills include:

• good vision and perception
• ability to concentrate and plan
• processing speed and reaction time
• ability to remember directions
• good hand–eye coordination
• planning and problem-solving.

When you are diagnosed with any type of brain tumour, it is very important to ask your doctor how your condition or treatment will affect your ability to drive.

Your doctor will usually advise you not to drive for a while. You probably need to wait for some time before you drive again after surgery and possibly after radiation therapy.

There are also some set exclusion periods your doctor will follow after certain treatments or events such as seizures. If you have had seizures, legally you will need to be seizure-free for a period of time before you are allowed to drive. If you stop taking your anticonvulsant medicines, you will also need to be seizure-free for a period of time until you are allowed to drive.

Before you start driving again, always check with your doctor. Laws in Australia require drivers to let their driver licensing authority know about any permanent or long-term illness or injury that is likely to affect their ability to drive.

Your doctor can tell you if you should report your condition or if there are any temporary restrictions. The licensing authority may ask for information from your doctor to decide if you are medically fit to drive. See below for some things that may help you return to driving.

I had a craniotomy for a benign brain tumour, but they couldn’t take all the tumour out. Later I had radiation therapy. Part of the tumour is still there, but it is stable, so I have been able to return to work and I can now drive again.

Debbie

How to return to driving

• Have a driving assessment to check your ability to return to driving. This may include doing an off-road assessment or having an electroencephalogram (EEG) to assess seizure risk.
• See an occupational therapist driving assessor, a neurologist or rehabilitation specialist to work out the type of problems you may experience while driving (e.g. a slow reaction time). The focus of the assessment is not to suspend or cancel your licence: it is to work out if it is possible for you to safely return to driving.
• An occupational therapist may be able to teach you driving techniques to help with weaknesses or show you how to make changes to your car (such as extra mirrors). You may also be able to drive with restrictions, such as only in daylight, only in automatic cars or only short distances from home.
• Some people feel upset or frustrated if they have licence restrictions or can no longer drive. You may feel that you have lost your independence or worry about the impact on your family. It may help to talk to a counsellor or someone who has been through a similar experience. Depending on your situation and your health, it may be possible to return to driving later on.
• Follow any licence restrictions. If your doctor says you are not safe to drive, you must not drive unless they change that medical decision. If you ignore the restrictions, your licence may be suspended or cancelled. You may be fined if you drive while your licence has been suspended or cancelled. If you have an accident while driving, you could be charged with a criminal offence and your insurance policy will no longer be valid.
• Talk to your doctor or visit Austroads.

It can be hard to predict how well you will recover from treatment for a brain tumour, and if or when you will be able to return to work. This may also depend on the type of work you do.

Some people find it hard to concentrate or make decisions after they have treatment for a brain tumour. At least at first, it may not be safe to operate heavy machinery or take on a lot of responsibility. Your doctors and an occupational therapist can tell you whether it’s okay to return to work.

Talk to your employer about adjusting your duties or hours until you have recovered. In some cases, it won’t be possible to return to your former role. It may help to talk to a social worker, occupational therapist or psychologist, or call Cancer Connect on 13 11 20 or join a brain tumour support group to try and come to terms with these changes.